Saturday, October 22, 2011

Well, since my last post, Jordin has stopped and stopped Bactrim again...and now we're about to start Levaquin. Reason being, after Jordin stopped the Bactrim after 21 days...she started coughing through the night within days. It never really made her sinus infection go away :o(
So after a few nights of being back on it, she was finally able to sleep through the night again. Now we're off it again and she is coughing early in the morning again :o( We had clinic for both girls yesterday though! So I guess the Steno was also sensitive to Levaquin, so we're going to try her on that. IF this does not do the trick Jordin will have to go in and have another Bronchoscopy done and they will plan to do a CT scan of her lungs under the same sedation. In the meantime between antibiotics, Jordin has developed some NASTY poops :o( Hope she's not getting c-diff before we even start the Levaquin! So, we got out on bail pretty much lol If the Levaquin doesn't help or if she can't come off it when she's supposed to...we'll be going in :o( We got a new spray saline and she let me try it on her today...she did pretty well :o) Hope it helps better than just the drops. She let me do A sinus rinse (30ml) the other day, but otherwise still freaks out. Will keep trying!
So, in addition to her sinus and cough issues, she is still having a terrible time with vomiting :o( She is back to doing it like 2, 3 or 4 times a day. We had an upper GI scheduled while we were there yesterday (so we were stuck at the hospital ALL day!). The docs first thought was that she had an obstruction from her tube balloon or something. Well, no obstruction of any sort....BUT NO motility either :o( The barium concentrate wasn't moving one bit in her tummy and she was not emptying hardly at all, if any. THAT's why she keep puking more! AND, she will puke up her enzymes 5 hours after I have given them in her tube! (Remember now, this child HAS a nissen!)
Anyways, so I guess we have to just wait and see what the doc says about the test. The CF doc said she was going to talk to the surgeons about using farrell bags to vent her g-tube...but I am not too sure if the meds aren't moving through, then they would just come out in the bag anyways...right? Well, I guess better than her having to get it all up! She vomits up lots of mucus too :o( We just ran out of Zofran, so I am going to just go without for now and see if it is any worse than it already is.
Both girls were up in weight. Jordin was at the 50% for BMI!!! RIGHT where they want her! Ashlee at the 32%...still gained, so they were happy :o) Jordin also grew like over an inch I think! (This is in a 3 month period!)More great news? Jordin has been trying out her potty quite often lately! She loves to go on her potty! It's so funny cuz she has a princess one that plays music when she goes :o) lol She is growing right up!
Ashlee is doing well in school :o) She says she can't see well in class, SO we have an appt on Monday to get her eyes checked! Hoping she doesn't need glasses! One more thing I gotta keep track of!
Well, that's all I have for now. I am sure Jordin will be waking up soon!

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